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Sylvie Lianna’s Story

Site created on June 5, 2008

Welcome to the site of Sylvie Lianna Isgro-Schicker! Our beautiful girl is living with Krabbe Disease, a rare metabolic disorder effecting the central nervous system. In appreciation of all the wonderful support we have received, we wish to share updates about Sylvie and our family's journey in the face of this devastating illness.

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Sylvie Lianna and her twin sister, Uma Claire were born on January 23, 2006 in Western Massachusetts. The first year of their twin lives was full of wonderful chaos and blissful love. By their first birthday, however, it became apparent that little Miss Sylvie had begun to lose some of the important skills she had recently acquired. Not yet walking or standing, in the first months of 2007 Sylvie lost the ability to sit by herself, hold her bottle, and feed herself. For the rest of the year, as Sylvie's ability to eat and support her own weight continued to ebb, she and her family began a long journey of medical tests, blood draws, surgical procedures, ending with a diagnosis of Krabbe Disease in Jan. 2008. Sylvie's twin sister does not have the disease, but she is a carrier. Krabbe is one of a group of rare genetic disorders called leukodystrophies that affect the central nervous system by disrupting the growth or maintenance of the myelin sheath that insulates nerve cells. Without myelin, nerve impulses are slowed or mis-directed resulting in loss of motor function. There are several different proteins required for proper myelin growth, and a problem with any one of these proteins results in a different leukodystrophy: a deficiency in the protein called galactocerebrosidase results in Krabbe. Today Sylvie is completely unable to roll over, hold objects, or move in any coordinated way. However, she can see, hear, feel and love with her whole being.

Newest Update

Journal entry by Kirsten Isgro — Jan 24, 2024

Happy Birthday beautiful humans! Entering your 19th year on this planet! As parents, Tom and I can hardly believe that our daughters have turned 18. We had a quiet party at home with Korean take out, a few gifts, lots of love messages, a couple of home visits, and two cakes--one for birthday and one for sheer celebration.

Congratulations to Sylvie for making it to 18! Congratulations mama for being promoted to full professor. Congratulations to Uma for being accepted to the University of Vermont with a merit scholarship. Congratulations for making it through another day!

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Newest Update

January 23, 2024

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